Son diagnosed with Chronic Lymphocytic Leukemia

[deters]

Hi all , I'm from Denmark Wisconsin, last June 2017 my 27 year old son was diagnosed with Chronic Lymphocytic Leukemia, His Doctor's told us he probably had it for 3 years before being diagnosed with it, as he was very sick with pneumonia, sinus infections, bronchitis, and shingles, we brought him into the hospital on Father's day and I demanded they do a blood test, due to him having no insurance they refused, his face was so swollen his glasses were being pushed off of his face, said if he wasn't feeling better the next 24 hours to see his regular doctor, the next day he went in to our family physician and a nurse practitioner did a chest xray and confirmed he had pneumonia again, and ran a series of blood panels, she told him his white blood cells were so high she couldn't read them so she had to send them off to the hospital, he git a call and was told to pack a bag of clothes and get to our hospital asap and if he couldn't get there to call an ambulance, once at the hospital they told us he was on heart attack watch due to a white blood cell count that was over 6 hundred thousand and they were popping and trowing alot of potassium into his system, so off to Froedtert Hospital in Milwaukee, we go , from Green bay, WI , he was put in MICU and was monitored very closely, they did a bone marrow biopsy and confirmed that he has CLL , the doctor's were scratching their heads at how young he is to be diagnosed with this, so the next day they started his chemotherapy treatment's, 10 days and we were finally able to go home and continue treatments here at home, as a parent .... It is one of our biggest fears as my father in law passed away from this.

[BeckyLUSA]

Wow! That is really young for CLL! Hope the drugs work and they can get everything under control!

BeckyL USA

[ikahan]

There are many new and very promising treatments available for Cll now. This is very frightening but don't give up hope.

[deters in reply to ikahan]

I will never lose hope. My son's battle is my battle, and we're not going down with out a fight!

[Newdawn Administrator in reply to deters]

Good for you deters, you sound like a lioness protecting one of her cubs and just as well you did! I hope he has a long and successful remission and thank goodness you kept pushing for answers on his behalf.

It’s every parent’s nightmare including mine because of a familial link.

Hope all continues to go well. Your son is surprisingly young for CLL which really must have taken the medics by surprise especially when they saw that whopper WBC!

Regards,

Newdawn

[deters in reply to Newdawn]

Yes they were very surprised , he was on heart attack watch due to his potassium being so high due to the high wbc. And low red blood cell was at 3.

[deters]

He is in a hematologic remission for now... And I hope it doesn't rear its ugly head until I am long gone from the earth!

[deters]

He was on CFR as chemotherapy.

[Cpt_N]

Deters,

I was diagnosed with SLL/CLL 4 months ago, I turn 26 this coming March. Please feel free to reach out to me or see my posts, I have made a few posts where the great contributors of this board have given me excellent advice. Your son and myself are in a similar boat, so it could be valuable to connect.

Best,

CptN

[deters in reply to Cpt_N]

Thank you for replying. Yes you and my son are in the same boat so to speak, I'll give you a little more info on him , when he was diagnosed , his spleen was 16 cm, they tested the 17p chromosome and tp53 both negative, his lymphnodes were not a problem they were concerned with his spleen ... He looked pregnant like 6 months pregnant, his wbc was over 600,000 six hundred thousand, and his red blood cells were at 3 they were wondering how he was even walking around... Said he was very lucky to have a LPNAPN that caught it and did all the blood work , as he would've probably had a massive heart attack in a day or so if he hadn't been seen by her, his white blood cells were bursting and throwing alot if potassium into his system he was on telemetry for 6 days , when we came home and met his Oncologist Dr. Mortara, he told us he has a chromosome abnormalitie T(14:19) igh-blc3 translocation 18 of 20 cells, . He had a bad reaction to the Rituxamab antibodies , at his 2nd round of chemo it was the 1st time he was getting it, so they stopped for an hour and then gave it slowly that was a very long day 10 hours getting treatment. He was stage 4 when diagnosed. Blessings to you. May you both stay in remission fir the rest if your lives!

[TinyTattooedToes]

Your son sounds like a fighter and I’m sure he’s grateful for having you in his corner! Although my counts and situation were no where near as serious as his, I was diagnosed aged 27 and my 40th Birthday is next year. Wishing your son all the best xxx

[deters in reply to TinyTattooedToes]

Wow that is fannnnntastic!! wishing you continued health success!!

[Suzieinwv]

❤️

[Firefly14]

Deters, that is terrible for you all, I am 40, was diagnosed 3 years ago and thought that to be rare. Your son has been through a lot for one so young, and of course you’ve been through it all with him, difficult but he’s lucky to have you on his team. Sending you love and best wishes

Firefly x

[deters in reply to Firefly14]

Thank you and yes , I never left his side , open FMLA at work so I don't get points and get fired.... Sending all my best to you also.

[Hoffy]

I am from Wisconsin as well. I have CLL. I often wonder if the "Roundup" Herbicide put on corn might have caused it. I don't live on a farm but used to swim every summer in a lake near farms. They sprain on the crops then it rains and goes in the lake.

Do you guys swim in a lake near farms?

Hoffy,

[deters]

Hhmmmmm never thought of that.... We live on a farmette.... And they do spray but I don't know what type.... As we rent out our fields.... Got me thinking ...... Thank you.

[annetxfan]

Very sorry for your son. I pray he is better!🙏🏻🙏🏻🙏🏻